Friday, January 29, 2010

No Traction

Today, as I sit in the school parking lot, it is –20 degrees Celsius here in Uxbridge – hence the inspiration for the post title. However it also explains the reason why this blog has been quiet for so many months. I knew that if I started writing about anything related to peanut allergies, too many raw emotions and soured words would bubble to the top to allow for a readable post.

Sadly, there have been no improvements in the situation at school. We are still not allowed to check all of the lunches in Liam’s classroom, nor are we allowed to check the lunches of the class that mixes with his twice a week. The school board seems to be dotting their i’s and crossing their t’s, as the last we heard from them was to ask for Liam’s allergist and our family doctor to write – in their own words – the same information that was included in Liam’s allergen avoidance policy. So … no traction there.

In the meantime …

The grand total of allergic reactions Liam has had since this all started is six. Six reactions in a matter of two months, after two years of no reactions while in Junior and Senior Kindergarten, where community snacks were still being provided by the parents. We finally decided that Liam would stay home on days when the classes merged. The final straw came through a short conversation with one of Liam’s friends from the other Grade One class.

On this morning while Liam’s classmates were presenting their lunches to Krystyne for a visual inspection (yes, this is what the board has dictated, since we can’t touch their lunchboxes), a little girl from the other classroom told her, “you’re not doing a very good job at checking our lunches.”

Questions about the lunch checks have become common since the change in policy, but this comment was a little surprising. Krystyne politely explained that we’re not allowed to check her class’ lunches anymore. Then she asked why.

“Because there are some kids eating Peanut Butter Cups for snack.”

WHUUUUAAAAAAT????

We don’t know whether it’s true or not, but we weren’t about to take any more chances. We know the girl and her family well and trust that she wouldn’t lie to us, and that would help explain why Liam reacted whenever the classes merged. Either way – true or not – we were unwilling to take any more chances with Liam’s life. So on mornings when the classes are slated to merge, Liam stays home until lunch, and the desks are washed down before he gets there for the afternoon.

Some progress at the school

There is some good news in all of this. In November the principal started a parent's advisory board on food allergies, of which Krystyne is a member. They review the school’s policies to help keep all of the food-allergic students safe. At the last meeting, they learned that the school will be putting a sink outside the primary grade classrooms so the children can wash their hands more often and more easily, rather than having to travel down two floors to the washrooms.

So, out of the frustration with this situation comes hope for some of the other parents at the school.

Wednesday, November 11, 2009

Beware at Zehrs

I was at our local supermarket this morning, and saw a box of Farmers Market cookies. What caught my eye was that the label on top of the box said “No Nuts”, as you can see below.

IMG_0497 sorry about the quality – the macro on my cell phone sucks

So, having trained myself to religiously read labels, I flipped the box over – only to read the following underneath the ingredient list …

MAY CONTAIN TRACES OF PEANUTS, NUTS, SOY AND/OR OTHER ALLERGENS AND CONTAIN THE OCCASIONAL PIT

WHAT??? According to the label from Zehrs, this product contains no nuts, but according to the manufacturer (Farmers Market – and kudos to them for clearly listing the allergens, BTW) there may be trace amounts of nuts (and apparently perhaps a fruit pit as well, but I digress).

The store manager won’t be in until later today, but we’ll need to ask them the reasoning for, and if they could change the confusing front label.

To some it may seem that I am unfairly targeting Zehrs, but they are the only supermarket in our small town and the closest competitor is 20 km away. Not many choices for parents looking for quick and easy snacks to send with their children to school.

Again, make sure you Read the Label every single time.

Tuesday, November 10, 2009

Fighting False Information

I always find it amazing how in a society that prides itself on tolerance and acceptance, there can be so much hatred directed towards people – and children, no less - with medical conditions that in some jurisdictions are classed as disabilities.

In the latest issue of Chatelaine magazine, you can find an article that dismisses food allergies as an overreaction by “parents and schools [who are] cowering in fear of the tiny peanut”. The article is a parent of a picky eater who has been inconvenienced by her son’s school enacting a ban on peanuts for the sake of safety of another allergic student.

The author proceeds to misquote studies and figures to support her theories. A good take on the article – and the overall reaction by the public and Chatelaine’s editors - can be found here (and yes, that’s my comment as ‘Hi-Lander’). I can understand the editors’ reasoning for publishing the article … it creates controversy, controversy creates sales, and sales create profit.

How often do the people with these negative opinions think about how it affects those of us that have to deal with food allergies on a daily (sometimes hourly) basis? Reading through the comments on both the original and CBC News articles rub salt deep into a fresh wound for me, as we are still dealing with the effects of one such parent at our sons’ school. Krystyne or I now have to be in the classroom from the morning bell until lunchtime to monitor for a possible reaction in hopes to catch Liam before it turns anaphylactic. What’s sad is that before this, Liam had no reactions in the two years he was in school. Since this change (read my last post for the details), Liam has had two reactions within three weeks. This is also the reason the blog has been so quiet lately – the whole thing is physically, mentally, and emotionally draining – as it is still not resolved.

When it comes to peanut allergies, there are varying triggers that require varying precautions.

The trigger with the highest threshold for causing a reaction is when someone actually eats peanuts. This is relatively easy to avoid – one commenter on the Chatelaine article (connieg) relates to this – simply don’t eat peanuts. This has no effect on picky eaters as long as food is not shared. Education of your own child is the key to keeping them safe.

The trigger for the next-lower threshold is in touching something with peanut protein (residue). In this case, the education of others is necessary as well as the child with the allergy. This is the reason that some airlines create “buffer zones” where peanuts are not allowed to be served. As long as the child doesn’t touch anything outside of that buffer zone, there should not be a reaction. In school classrooms, the easiest thing to do is ban peanuts from the room (at least in primary grades, until the child is old enough to manage their own allergy). There is a Kindergarten student at our boys’ school who is touch allergic to peanuts.

Many people believe that using an anti-bacterial hand wash or spray can clean surfaces of peanut residue, but anti-bacterial is not anti-protein. When wiping a surface with peanut protein using anti-bacterial wipes (or sprays, or alcohol-based cleaners), you are merely smearing the protein around. It needs to be washed with ‘regular’ cleaning agents (i.e.: SOAP).

Liam’s trigger has the lowest threshold (rare even in his allergist’s experience). He is in the 1% of peanut-allergic children who are airborne-allergic to peanuts. This means that if you ate peanut butter for breakfast, he can react (and has reacted) to you. With each reaction, the allergy gets more severe, and lessens any chances he may have had of growing out of it later in life. His reaction times have lowered from over an hour (airborne) to within 15 minutes, and from minutes (ingesting) to seconds. This is another reason why many schools put peanut bans in place, and why Liam always carries his EpiPens with him.

With more misinformation, such as in the Chatelaine article and related comments, comes the need for more accurate education. When Anaphylaxis Canada learned that the article was to be published, they penned and submitted a formal rebuttal letter, and started a discussion forum in Chatelaine’s Health section – which has since been buried by discussions on H1N1 concerns.

Education is the key, but like all keys, needs to fit the lock.

Wednesday, October 28, 2009

Enough is Enough

For the last few weeks, I’ve been fighting the strong urge to speak out publically about an issue at Liam’s school – one that’s seen him miss classes and made us the topic of conversation in the staff room – but, as Popeye would say, “That’s all I can stands. I can’t stands no more!”

I do apologize that this will be a long post, but I’ve included headings to help organize my thoughts and assist in reading.

Background
All three of our boys are allergic to peanuts. Joseph and Keeghan, our older two, only react if they eat trace amounts. Liam, our youngest, is by far the worst reacting of the three. He is anaphylactic to trace amounts (down to 10 ppm) but he is also airborne allergic. This means that if you eat peanut butter – or anything else with nuts – and are in the same room with him, he will react to you. Our allergist has told us that he is in the 1% of children with peanut allergies who have this airborne trigger. His reactions are also atypical – there’s no swelling or rash. Instead, he loses blood pressure that if left unnoticed can (and has) put him in the emergency room.

School Life Before
Liam was diagnosed with this allergy three years ago. Two years ago, at age 4, he started school. The boys’ school and the parents of his classmates until now have been very understanding and supportive. The school has an “avoidance policy” for every student with a food allergy. This policy describes accepted and agreed-upon procedures for reducing the risk of exposure to the child’s allergen(s). Part of Liam’s avoidance policy is that the students’ lunches are checked for non-peanut-free snacks.

This school (which I will not name, because the faculty and staff have been very cooperative with us over the years) is too small and too crowded (read “old”) to allow for a lunchroom, let alone a peanut-free table within it. For this reason the primary students eat their lunch and snacks at their desks. Hence the need to ensure that, as the school board policy states, “the students have a safe environment in which to learn”. So for the last two years, Liam’s class lunches have been quickly checked each morning. The children place their lunches on a bookshelf outside the classroom. While class begins, the lunches are discreetly checked – not someone groping through the lunch bag, but a quick glance at packaging and gently shaking the bag to see any that may be obscured. This is something that my wife Krystyne has volunteered to do since Day One. She is phenomenal at differentiating “safe” and “unsafe” items quickly – it still amazes me. If something is found, Krystyne quietly asks the teacher to speak to the child, and they are asked if they could put the “unsafe” item in their backpack to enjoy after school. The student is then offered a peanut-free item to replace it (which we have bought with our own money and left in the classroom for this purpose), and the day continues.

In this way, we are taking the responsibility of keeping Liam safe back on us rather than burdening others with it. The teachers, staff and other parents have often thanked us that this worry has been lifted from their shoulders and that, as one mom put it, “even if I screw up and accidentally put something in there, I know it’s going to be caught.” Krystyne has also volunteered to do this for another touch-allergic student who started Kindergarten this year as part of his avoidance policy. And despite everyone trying their best, there have been “unsafe” foods found.

But No More - “The Incident”
Three weeks ago, the mother of a child in Liam’s class decided that this showed a “lack of trust” on our part and asked the vice-principal that the lunches no longer be checked. The mother suggested that Liam could eat his lunch outside of the classroom instead. The vice-principal agreed with us that this did not help avoid exposure to peanuts, as Liam’s classroom could still be contaminated. Not finding any satisfaction, the mother then went to the school board complaining now of privacy concerns. In a knee-jerk reaction, the school board went against Liam’s established avoidance policy and put a stop to the lunch checks.

In a long, tearful meeting with the vice-principal, we came to the conclusion that if the school was unable to provide a safe environment for Liam, he could no longer attend until it was resolved. We offered to sit down and talk with the other mom and asked the vice-principal to convey that message to her, but in the end we were left with no other choice but to keep Liam home until the matter could be addressed.

Sadly this decision affected the touch-allergic child as well, as his classmates’ lunches were no longer being checked either.

School Board Miscommunication
After downloading and reading through the policies available on the Durham District School Board’s website we saw that, indeed, the board was going against its own guidelines. We left messages for trustees, administrators, superintendants, but got no answers. At this point we called our MPP (Member of Provincial Parliament), who assured us that under Sabrina’s Law we were fully within our rights and that he would gladly help us – but cautioned that the matter would become immediately public once he got involved. We thanked him and declined his offer for the moment to allow the possibility of a resolution through the school board. Liam remained home, feeling that his friends no longer wanted him in the classroom.

Finally we were contacted by the School Board’s administrator, who informed us that she had talked with a representative from Anaphylaxis Canada and been told that in her words, “airborne allergies account for only 1% of food allergies, so don’t worry about it.” Needless to say we were taken aback. We spoke with the same representative at Anaphylaxis Canada who assured us that she was grossly misquoted, and that the school board administrator did not even mention that she was inquiring about an airborne allergic child. It took a few days of back-and-forth calling for the administrator to understand Liam’s documented sensitivity and severity.

Since then, we have talked with other members of the school board (we were originally told to only deal with the administrator), and a plan was arranged to be put into place.

Baby Steps
For the first week, Krystyne was constantly on the phone. The principal at Liam’s school had taken over the matter from the vice-principal, and one morning we went in to discuss if there was any progress since talking with the board. We brought Liam with us, as it was his education (and life) we were dealing with, and we make it a point not to lie to our children about what’s going on. Within 5 minutes of being in her office, I noticed the first signs of Liam having a reaction – you could start to see the veins through his temples. If we catch it at that point and keep him active (natural adrenaline), we can usually halt the reaction with Benadryl, which he also carries with him. While Liam munched on the pills and bounced around the office, we explained how we can never know what triggers his airborne reactions – maybe residue on a doorknob or surface, someone in the outer office, anything – and that’s how subtly they start. While unplanned … and definitely unwanted … Liam’s reaction that morning helped the principal understand what she was dealing with. So a “lunch check permission form” was drafted to be sent home with board approval.

During this time, a number of parents had come to us and asked if we knew which mother it was (“No.”), if we wanted them to write a letter (“Sure, but only to the principal or board. Not the media.”), or if there was anything else they could do (“Just keep praying.”). We didn’t tell many people what was going on other than the bare minimum, since we didn’t want to be what everyone was talking about around the dinner table.

The school board has since said to us that they have never received as much support – or even comments either for or against – on any issue in the past as with the support from parents on this one.

A few days later, all but 2 permission forms had come back with resounding support of the lunch checks, and the decision was made that any children with “No” forms would eat in another classroom and have to wash their hands and faces before coming back into Liam’s class. After a full wash down of the classroom, we sent him back to school, and all but those 2 lunches were allowed to be checked in the manner they were before.

Ostracised!
The next week, another complaint came in from the same mother that her child was being singled out by eating in another room. So in another knee-jerk reaction, all of the students are once again eating in Liam’s classroom regardless if their lunches have been checked or not. Once again policies are being thrown out the window and a child’s life is being threatened.

The two Grade One classes fully interact with each other – they use each other’s classroom for activities often, such as making crafts, and using wooden geometric shapes and blocks in math. This is why originally both classes’ lunches were being checked. The closest sink/washroom to the classrooms are two floors down, so sending them downstairs before each time they merge would take away too  much instruction time.

Under the advice of other principals in the region, the school’s annual bake sale was cancelled and replaced with a “peanut-free Halloween treat sale”. The school actually made more money with it than with previous bake sales.

And this is not just overreaction by a food-nazi or an overprotective parent. There have been incidents in the school with kids bringing mixed nuts for snack, or claiming they have peanut butter on their fingers as they chase known allergic children around the playground. A couple years ago, one mother in another grade heard that they were not allowed to send peanut products with their child and deliberately packed a jelly sandwich with a dollop of peanut butter in the middle. Luckily, their child knew she had, and took their lunch to the school office to tell them about it.

The Last Straw
This morning while Krystyne was checking the lunches, she was handed a note about an upcoming class activity in which the primary classes will be making a vegetable soup lunch. Among the list of things for parents to bring is french bread. Bakeries are understandably notorious for cross-contamination. In the past, we have offered and provided treats and peanut-free baked goods for the class. Krystyne offered to bake all of the bread and bring it in. She was told by Liam’s teacher that it might be better to keep him home that day instead.

For the first time since all of this started, the classes merged for an activity this morning. Within minutes Krystyne noticed that Liam was having an airborne reaction to someone else in the classroom. So out came the Benadryl and she stayed with Liam to make sure that the reaction had been halted.

So while the principal and most of the parents have been very supportive, the matter is still unresolved and we can no longer trust that Liam has a safe learning environment. For that reason we have decided to bring it forward publically in the hopes that this can help educate others, and raise awareness about the need for safe learning environments for students with severe food allergies.

Other information on Sabrina’s Law can be found here.

Saturday, October 10, 2009

Disciplinary Abuse, Criminal Negligence, or Worse?

This is certainly a story to keep a close eye on. There is no crime being brought against this teacher, but should there be?

http://www.upi.com/Top_News/US/2009/10/10/Mom-Teacher-tried-to-sicken-allergic-boy/UPI-10131255151458/

Thursday, September 24, 2009

Peanut-Free Field Trip

Krystyne often volunteers at the boys' school. From baking to shopping for peanut-free snacks to chaperoning field trips, she's a regular in the halls.

Recently, Keeghan's cross country group had a meet at another school and Krystyne volunteered to drive some of the students. Before she left, she printed up some small signs on cardstock to place inside the van to mark it as a "peanut-free zone". Since Liam is trace-amount allergic nuts are allowed nowhere near our house or car.

The kids' reactions were cool. They noticed the signs right away, and asked if the stuff that they had brought with them was ok. They thought it was great that there were alternative, peanut-free snacks in the van just in case something needed to be replaced.

Thursday, September 10, 2009

First Day Down

First off, I want to apologize for not posting lately. My laptop has been put out of commission and I am taking longer than expected to get things back up and running on an older computer.

Tuesday was the big day. As many parents of peanut-allergic children, we were nervous wrecks the day before and on edge the morning of. But I am happy to report that everything went extremely well.

All of the class lists were posted on the outside walls of the school, and the teachers were mingling about their individual areas of the schoolyard to meet the students and parents. We found each of the boys’ areas and Joseph ran off to play with friends – Grade 6’s won’t wait with their parents :)

Keeghan’s and Liam’s classrooms are across the hall from each other, so we were able to wait in the same area for them to meet with both teachers. When the bell rang, we headed up to Liam’s classroom to help with the morning routine.

The children swapped their outdoor shoes for newer indoor ones and then placed their lunchboxes on a table and shelves outside the classroom.

lunchboxes
lunchboxes waiting patiently

Then Liam’s teacher took the class on a tour to show them where the washrooms were – and wash their hands as part of their morning routine – then back to the classroom where Krystyne had prepared a little talk about allergies – we need to get a copy of Allie the Allergic Elephant for Liam. We also had Be a PAL cards (from the PBS Kids’ Hooray for Health activity book) for the teachers to give out. Then Krystyne and I were off to follow up with the Vice Principal.

The really cool thing was that within the novella of take-home notices from the school that night we found the Peanut Alert notice that the Principal drafted based on Krystyne’s letter to parents that she had created for Liam’s Kindergarten class. AND the one-page notice that alerted parents to the fact that there are peanut-allergic students asked (in bold) for cooperation to make the school a peanut-free school.

Liam went through Junior and Senior Kindergarten with no reactions at school – we’re praying that this streak continues … and big brother Joseph has volunteered to be a lunch monitor for Liam’s class again this year, so he’ll help keep his brother safe.